Some days there’s no other description for what Dr. Myhill has tagged “pacing” … an essential component of the CFS/ME daily survival reality. Along with a ridiculously long list of supplements I can’t do without, there’s this lil thing called pacing. It can often be described as purgatory. Some docs say a CFSer should rest 3 minutes for every 1 minute of activity. O.o That leaves no time for an actual life and makes a ton of sense if you’re in the worst of the CFS badlands. Fortunately, I’m not there. But, I’ve been close to the edge of that horrible wasteland and have had to up the pacing realities. So, what does it mean? It means I’m up and working for a few hours and then on the couch with the laptop. Or without it, flat on my back staring out at the trees and sunshine. Or I’m in a chair under those trees. Last week, I went bowling with my daughter on her birthday. I was described as graceful and fluid in motion. But. What did it feel like? My knees almost buckled 3 times. My upper body was screaming, my back howling and my legs literally shaking. How do you hide this? You sit down as soon as you’ve taken your turn. You breathe deeply, sip at the water you brought and refuse to panic.
The result? 3 days on the couch with occasional outbursts of here and thereness, popping Ibuprofen (it’s against my nutrition religion to do that but i do it when desperate), rubbing magnesium oil on the pain-filled limbs and riding the wave of agony.
Put this in perspective. What kind of person am I? The running/sprinting, take me to the river, up the mountain, down the beach and to the bowling alley, down the bike trail type. Oh and there are the random dance fests. I miss it all. And I have not had the chance to really fully cultivate who I am outside of this purgatory, when things weren’t as bad as they’ve been for this almost 6 year stretch. Why? Because this “syndrome” (insert expletives here) has been part of my life since my early 20s. That’s 20++ years.
So. How does someone in purgatory find the meaningfulness in it all? Well…there’s this river perpetually flowing beneath the surface of every moment, and under trees and in the breezes blowing by, in the conversations filled with heart and soul, baring vulnerability and frustration, joy and longing. We’re here for these pleasures, and for the honor of meeting the challenges love tosses our way from time to time. But some times only a raging ranting session of frustration venting proportions will do. Pacing the emotions…pacing the body…corralling the longing into deeper appreciation for everything from birdsong to treespeak to…
Yes it is purgatory and I’ve only been diagnosed for 3.5 years, not 20, I empathise.
I am pacing and trying to stop the boom and bust cycle of activity BUT you are correct as this means I have to become someone else to do it!!!!!!
The boom and bust cycle has its appeal for me right now, I must say. And I do alternate between pacing and shoving myself around until the crash. It’s tough NOT to. Thanks for dropping in and commenting! It’s great to get feedback from another CFSer.